Living with Fibromyalgia: The invisible illness from a single mums perspective

I can’t remember never not being in pain, it’s become apart of my life, engrained in my every move and thought.

They don’t tell you when you are diagnosed that your symptoms will deteriorate, that one day what you could do normally without thought is now a struggle.

I’m sure most people, like me, when they were diagnosed they had a sense of relief. All those months, years of feeling exhausted and in pain, finally someone was saying, “you’re not going mad, your symptoms are real”. Finally someone can see what a struggle you are living on a daily basis.

The pain, no one can describe it perfectly. The fact that not only your muscles and joints hurt but your skin, your skin to the slightest tough, from a loving embrace or the stroke of your cotton jumper can cause such intense discomfort that you just want to rip your skin off.

The fact that you wake up feeling like you have had no sleep, if anything your sleep has been sucked out of your body from your past. You struggle to lift your weary body from your bed, that once was comfortable but now feels like you are laying on bricks. You place your feet and feel the breaking sensation that has now become a daily feeling.

No one can prepare you for walking around like a zombie as you make your tea and get your child breakfast, all which takes such enormous effort mentally and physically.

You sit down, after only being on your feet for less than 15 minutes, it’s proven too much and now you are sat with a heat pad pressed against your back trying to warm up and soothe your aching muscles and joints. It’s the weirdest sensation, to feel like your body is rigid, your muscles have turned to cement and you are so cold to your core.

It doesn’t even have to be a cold day for your body to feel like it’s been walking around in the snow, cold and frozen solid.

Most days your mental capacity is 0. You can’t concentrate, nothing goes in or stays in. People repeat over and over what they are saying. And sometimes, nothing, not even registering.

How do you bring yourself to look after your child, when your brain has had enough, the thought of even having to get up and walk to the kitchen to prepare them a cup a soup is so taxing that you mentally sigh. All I have to do is stand, walk, boil the kettle pour it in and serve it. But it’s so much! You have no idea, how something so normal, so easy can become such a big task, an ordeal both mentally and physically.

The worse part is, is that it’s an ‘invisible ’ illness. Unless you can see the exhaustion on your face or the grunts and groans as you move about. It’s not seeable, no one would know that just you being out the house has taken so much energy and effort both mentally and physically.

What can you do, you have to keep going. Hope that your flare up eases just a little so you can maybe not feel like your feet are being crushed or that your brain feels like it’s been in a science lab solving so many scientific problems that your brain has now exhausted itself completely.

You keep going. No matter what. You get up, you drag yourself around and you take care of your children. Because what else can you do? Your body wants to lay down, to be wrapped up, to be waited on so that you don’t even have to move or think. But your heart, your soul is yearning to be able to run, to walk, to have the energy to take your daughter to the park and have fun all day. To just be, the you that you used to be. A person doing normal daily stuff.

You have fibromyalgia, an invisible illness. It might have taken our bodies and exhausted our minds, but it can’t take our spirit away. We will keep going. That’s all we can do.

This is just a little glimpse into the daily life of a Fibromyalgia sufferer. Unfortunately there is so much more that goes on.

There is no cure for Fibromyalgia, only a few things that might hopefully help to lessen the pain.

To find out more, visit the NHS link here.

If you know someone with Fibromyalgia, make the effort to learn about it. Maybe offer some help. Most people are too proud with the condition to ask for help. They feel like frauds, like it’s all in their minds. It’s not, it’s very real and they could do with a little help.

And if you are a fellow Fibromyalgia sufferer, you are not alone. Even though you are trying your hardest to keep going, other Fibromyalgia sufferers know just what you have to go through daily. Stay strong x

Symptoms of fibromyalgia (taken from NHS)

As well as widespread pain, other symptoms of fibromyalgia include:

• increased sensitivity to pain
• muscle stiffness
• difficulty getting to sleep or staying asleep, which can make you feel very tired (fatigue)
• problems with mental processes (known as “fibro-fog”), such as difficulty concentrating or remembering things
• headaches
• irritable bowel syndrome (IBS), a digestive condition that causes stomach pain and bloating
• feelings of frustration, worry or low mood

The symptoms of fibromyalgia are changeable – for example, they can sometimes suddenly improve or get worse.

See a GP if you think you have fibromyalgia. Treatment can ease some of the symptoms, although they’re unlikely to disappear completely.

Support groups

If you have fibromyalgia, support groups can provide an important network for talking to others living with the condition.

Fibromyalgia Action UK is a charity that offers information and support to people with fibromyalgia.

If you have any questions about fibromyalgia, call the charity’s helpline on 0300 999 3333.

Fibromyalgia Action UK also has a number of regional co-ordinators who can put you in touch with a support group near you.

Another organisation you may find useful is UK Fibromyalgia.

Do you suffer from Fibromyalgia, or know someone who does. Leave us a comment below and share how it’s impacted on your life.